Long-term effects and psychological adjustment: study protocol of a large register-based study on quality of life among survivors of hematological malignancies

Table 1 Overview and categorization of instruments applied in the questionnaire

Domain	Issue	Measures
Patient characteristics	Sociodemographic	Internally developed
Patient characteristics	Medical	Internally developed
Quality of life
Physical	Symptoms; physical and cognitive functioning	EORTC-QLQ-C30 [37]
	Cancer-related fatigue	BFI [55]
	Cognitive functioning	AFI [68]
	Comorbidity	Comorbidity Index [76]
	Care level and disability	internally developed
	Late/long-term effects	internally developed
Psychological	Emotional functioning	EORTC-QLQ-C30 [37]
	General satisfaction	FLZ^M [47]
	Depressive symptoms	PHQ-9 [50]
	Anxiety symptoms	GAD-7 [50]
	General distress	NCCN Distress [52] Thermometer [52]
	Fear of progression	FoP-Q [54]
	Late/long-term effects	internally developed
Social	Role and social functioning; financial difficulties	EORTC-QLQ-C30 [37]
	Social and medical care need	SCNS-SF34 [70]
	Social support	F-SozU [44]
	Use of/satisfaction with social care	internally developed
	Use of/satisfaction with medical care	internally developed
	Employment and work ability/conditions	WAI [72]; internally developed
	Partnership, sexuality and fertility	PFB-K [45]; Geue et al. [75]; internally developed
	Late/long-term effects	internally developed
Premorbid/Personality Traits	Affectivity	PANAS [48]
	Coping styles	UCL-SF [57]
	Psychological flexibility	AAQ-II [60]
	Illness centrality	Wiebe et al. [63]; Helgeson et al. [63, 64]
	Changes in Self Concept	internally developed
	Health locus of control	MHLC [65]
	Health behavior	FEG [66]; report of Health Monitoring [67]; internally developed

Note: EORTC-QLQ-C30 and questions on late/long-term effects are assigned to all QoL domains due to multidimensionality/open response format

ISSN: 1471-2407